Category: Disability Rights

As I mentioned in my last post, I have had a post about so-called “person-first” language percolating. This will likely not be my only post on the subject, but I at least want to begin formulating my thoughts on the matter — partly because I expect that this will come up as I begin my studies in human services, and I want to have at least some thoughts lined up.

Let’s start with some definitions. “Person-first” (or “people-first”) language is a formulation used in many branches of human services, education, etc., wherein the individual’s disability or condition is expressed second, after some noun describing the individual: person with autism, for example. A common alternative is called “identity-first” language, which uses an adjectival form of the disability/condition before the noun: autistic person, to continue the example.

The way it is usually presented, the argument for “person-first” language is that it emphasizes that the individual is, well, a personfirst, and then their condition or disability. It puts forth the notion that a particular attribute is not the person’s identity, but more of a secondary trait. People who insist on this formulation often say we should not let our disability/condition/etc “define us.”

But here’s the trouble: it’s not up to others to decide what defines us. Many of us do consider autism part of our identity, and not as something separate (or separable) from who we are. It pervades our entire way of thinking, communicating, and viewing the world. “Autistic” describes the type of person I am; autism is not some incidental trait I happen to have.

Let me expand on that a moment. My last post consisted of screen shots I took of Google auto-complete search suggestions for various examples of “person-first” language. I found similar suggestions offered by Yahoo’s search engine, as well. Essentially, I wanted to convey a sense of the sorts of things people use this type of phrasing for — in other words, what sorts of things are seen as something one “has” rather than something one “is.”

Looking at those examples, I generally do not consider autism to be in the same category as other things people “have.” Many of these things are temporary conditions: having a fever, for example, or having braces. Autism is not temporary; it is lifelong. Others are things that do not have easily-created adjectives: “children with hair loss” cannot easily be changed to “hair-loss-experiencing children,” or some such. Autism has a ready adjective: autistic. Still other examples are physical traits that could often go either way in terms of language: “people with green eyes” vs “green-eyed people.”

That last one I could make a case for; mixing up the language between “autistic people” and “people with autism” isn’t intrinsically negative in my mind. After all, some people on the spectrum do not consider autism a part of their identity, and prefer person-first language — that’s fine, too. I am entirely in favor of people using whatever language they prefer about themselves. What I do not appreciate is the insistence that only certain language be used about a group of people — and especially not by people who are not in that group themselves.

(I am also in favor of varying one’s language in the interest of euphony, which frankly is another peeve I have when it comes to insisting on person-first language all the time. It’s clunky.)

But here’s the thing: when it comes to eye color, most people don’t, ahem, bat an eye over one’s choice of phrasing. You could say “blue-eyed” or “with blue eyes” and frankly I don’t think most people would notice. People only insist on “person-first” language when the characteristic in question is something stigmatized, something that they think we should distance ourselves from. They say this phrasing helps remind others that we’re people first, because people will otherwise not think so.

A recent article in the Journal of Child Psychology and Psychiatry highlighted this fact, and suggested that the insistence on “person-first” language may serve to accentuate stigma. Where the prescription for person-first language was intended to apply to everyone, it is used more frequently for people with disabilities, and “…is most frequently used to refer to children with the most stigmatized disabilities.” Because of this, it actually highlights the stigma attached to certain conditions, and helps to perpetuate it.

I found this paragraph particularly telling:

“Furthermore, children with more stigmatized disabilities are more likely to be referred to with gifted person-first terms (e.g. gifted children with autism), whereas children with less stigmatized disabilities are more likely to be referred to with gifted identity-first terms (e.g. gifted blind children). For children with two disabilities, the more stigmatized disability is more likely to be referenced with person-first language (e.g. blind children with autism, 94%), whereas the less stigmatized disability is less likely to be referenced with person-first language (e.g. autistic children with blindness, 6%).”

As I said before, I have no quarrel with people who choose person-first language for themselves. I also have no problem with using a mix of language for the sake of variety (though I prefer “on the autism spectrum” as an occasional alternative to “autistic”). But I think the institutional insistence on using only “person-first” language with regard to autism is marginalizing — especially considering that it has been repeatedly demonstrated that there is a widespread preference for “identity-first” language among autistic people ourselves

(Ok, it really starts tomorrow, but I’m already looking over the horizon in weary resignation.)

Last April was my first time writing about this phenomenon, as it was my first time experiencing it…well, no, not my first time as an autistic person, because I’d been that all along. But it was my first time knowing that I was autistic, knowing that I was one of the people the world was allegedly being made aware of.

Did all that awareness work? It hadn’t up to that point; as I wrote last year, all of the previous “awareness” months hadn’t made me aware that I was autistic, so clearly the type of “awareness” being spread was not so helpful in that regard. From the generally baffled and surprised reaction I’ve gotten from people as I’ve started to tell them I was autistic, it hasn’t helped them become more aware, either. And my continued exposure to mainstream impressions of autism hasn’t convinced me that awareness is growing on a larger scale, either.

So I’m with those who say we don’t need any more of that type of awareness. But we do still need more real awareness — the kind of awareness that comes when we listen to what autistic people have to say about autism. We need the kind of awareness that counters the fear-mongering approach of groups like Autism Speaks, the kind of awareness that would help people like me realize we’re on the spectrum, and help the people around us to understand how we see the world.

I am also with those who say that beyond Autism Awareness, we need Autism Acceptance. It isn’t enough to be “aware” of autism if that awareness leads you to rail against it and treat it as a great burden on society that needs to be cured. Although I would hope that true awareness would not lead in this direction, acceptance is still another step beyond awareness. As Shannon Des Roches Rosa has written, “Awareness is passive. Acceptance is a choice.”

So should we rename April to be Autism Acceptance Month? It would be an improvement, I think, and I fully support those who do so. But I also think we can go another step further, and call it Autism Appreciation Month.

Because just as we need more than awareness, we need more than acceptance. Acceptance can manifest in very positive ways, but it can also manifest in ways that involve one group “putting up with” another group as an act of charity. “I accept your many flaws and love you anyway” is sometimes the vibe I get from that sort of thing. (Not always, but often enough to raise my hackles.) Appreciation, though, requires recognition of our strengths as well as our struggles, of our gifts as well as our “deficits.”

Can we as a society come to appreciate the benefits bestowed by our sensitive autistic senses, our iconoclastic honesty, our deep love of our interests? Can we celebrate the physical and emotional expression embodied in spinning, bouncing, flapping, or rocking? Instead of grudgingly making accommodations, can we learn that making workplaces and public environments more comfortable for autistics makes them more comfortable for everyone, and actually thank autistics for pointing out the problems?

That’s what we really need: a true celebration of our differences, and recognition of how those differences can be a positive force in the world. But I think that’s going to take a little more than one month to achieve.

Now that I finally understand that I am autistic, and can point to at least some of the ways in which that has affected my life, I am able to rethink many of my experiences in new ways. Like many other people whose autism went unrecognized until adulthood, I feel able to look back with new eyes, especially on those places where I struggled. Just as with words, meaning changes with context.

I am also starting to think about how I can bring that understanding into my present work and home life. Now that I know (at least a little better) what kinds of support and/or accommodations I might need, how can I go about creating or asking for them?

Up until this point, I have gone through life without accommodations — or rather, it would be more accurate to say that I have made self-accommodations. My relationships, my living arrangements, and my employment choices have all been influenced by my own sense of what worked for me and what did not. In most situations I have made changes when I felt things reach a breaking point, rather than continuing on and getting, well, broken.

But the trouble is, outside the context of disability, self-accommodation can easily look like failure; you just can’t handle the things other people seem to be able to. Even asking for accommodation (again, without that context) will often be seen as complaining. And gaining this context for myself doesn’t always help when it comes to support I need from other people, especially in situations where I am not sure how much to disclose.

And now… I’m not sure what else I want to say at this point; I only got this far by sort of thinking out loud. The main thing is that I don’t really know how to do this — after all, I grew up not knowing I even had a disability. And I’m sure that as I start to ask for the things I need, some people will interpret that as meaning that I’m not disabled enough to need supports. It’s a vicious circle.

Of course, the ideal situation would be if everyone, disabled or not, could ask for what they need without being seen as a whiner, a troublemaker, or a burden. We all have our strengths and weaknesses, as well as preferences for how we can do our best work. So let’s just build that world, and this whole question will be moot. Easy peasy. 😉

I didn’t want to start out this way. I didn’t want my first post on this blog to be about pain and tragedy. But today is the Disability Community Day of Mourning, and I did not want to let that pass without a few words.

Last year, at age 43, I discovered that I am autistic. I see this new knowledge as a blessing, a gift of self-understanding and self-acceptance that puts so many struggles and triumphs in my life into better perspective. It helps me to honor myself as I really am, to appreciate my strengths and my neurodiverse perspective while also connecting with others who share similar “wiring.” Yes, there are difficulties associated with autism, but finally knowing that I am autistic helps me manage them and allows me to take care of myself better.

But there’s also no escaping that much of the world does not see things the way I do. They do not see autism as a benefit to society, or even as a neutral difference among human beings. Instead, they see it as a tragedy, as something to be eradicated. They see it as something harmful, as a burden to those who love us — a burden so great that they will even excuse violence done to us by those who claim to love us.

This day of mourning exists because, with frightening frequency, disabled people are killed by their families and caregivers, and society sympathizes with their killers. Zoe Gross explains it better than I could, in her essay, “Killing Words.” (That link opens a pdf document.) All I want to add is that today my heart aches for this new community I have just found, a community that has already helped me so much as I learn more about my place within it.

So for all those in mourning, I stand with you. And for those who would like more information, ASAN’s Anti-Filicide Toolkit is a solid place to start.

(Image of a yellow candle on a black background, with the words “Disability Community Day of Mourning” in white.)